Yamil Kouri via Crowdrise
February 12, 2012
BENEFITING: Massachusetts Eye and Ear Infirmary
ORGANIZER: Massachusetts Eye and Ear Infirmary
EVENT: 2012 Boston Marathon
We’ve all experienced highs and lows in life. The key is to take the lows and turn them into something positive and bigger than ourselves. I am writing to you today to share with you my gratitude and commitment to Dr. Shizou Mukai and the Massachusetts Eye & Ear Infirmary.
Many of you know that my son, Yamil, was diagnosed at the age of two with a rare genetic connective tissue disorder called Marfan syndrome. It is a multi-system disorder mainly affecting the heart, eyes, and skeletal systems. For many years our biggest concern was the integrity of his dilated aorta, with a near second concern for his vision. We have been committed to finding the very best clinicians and research to create a treatment care plan that would give him the best odds of a full and healthy life.
At the age of 5 we took him to Perkins School for the Blind’s Low Vision Clinic where he was labeled legally blind (20/200 with corrective lenses). We registered him with the Mass Commission for the Blind and he entered kindergarten with the support of Orientation and Mobility Specialist, a Teacher for the Visually Impaired and legal requirements for the school to provided enlarged materials, magnifying glasses, priority seating and more. However, we continued our search to improve his vision.
Finally in 2009 at the hands of the very talented ophthalmologist Dr. Lois Smith at Children’s Hospital Boston, Yamil was granted near perfect vision of 20/25! It was an AMAZING year! He learned to ride a bike and more. Yamil has a competitive nature was desperate to be like a regular boy and play a sport. My wife and I struggled with the decision, but ultimately let him play minor league baseball. We knew he would not be a star, but wanted to give him the experience. He wore his uniform constantly! This was a dream come true for him. In late June his team made it to the playoffs. Yamil was playing third base and in a very routine play he caught a pop-up fly and made the out. The coaches, parents and my wife and I were brought to tears (of joy) and cheered for him as if he won the World Series!
On August 23, 2010, at a routine eye exam with Dr. Smith, we discovered that Yamil had a retinal detachment that affected more than 50% of his retina. Our gratitude for the year of normal vision turned to despair with this grave situation. We were immediately referred to Dr. Mukai at Mass Eye and Ear and he scheduled the urgent surgery.
Dr. Mukai is one of the leading experts in retinal surgery in the U.S. He was able to externally repair Yamil’s retina and allow for a significantly less restrictive recovery than an internal repair. Yamil was able to start fifth grade will all his friends a few days after his surgery! Today, Yamil is reading and enjoying Middle School. His vision in his “bad” eye is 20/60 with the possibility to continue to improve!
We are all blessed! Yamil is committed to sharing his story and give hope to others whose vision is threatened. As a physician, I am deeply indebted to Dr. Mukai and his ability to fix what I could not.
I will be running the Boston Marathon on Monday, April 16th in an effort to raise money to support Dr. Mukai’s sight saving work. My goal is to raise at least $10,000. I hope that you will consider joining me in making a difference in preserving the fragile gift of sight.
Thanks for your consideration and warm regards,